hi all

peggy wrote, in part:
> A pharmaceutical company is flying me to St.
> Louis next week (Monday) to speak to about
> 200 newly trained pharm reps. The topic:
> "What It's Like to Live With Parkinson's"
> I want to be sure that I don't leave out
> anything, so I need your responses here,
> and I need them fast! I will only have about
> 20 minutes to convey to many who don't have
> a clue as to PD's effect, so be brief but
> thorough ...

and then someone wrote, in part:
> It's like living in a glass house and watching
> the world live its life ...

and then someone wrote, in part:
> Someone recently said to me that the effects
> Parkinson's has on a person can seem like
> character flaws to anyone who doesn't know
> what Parkinson's is ... it's extremely
> frustrating to live with Parkinson's and
> it never gets any better ...

and then someone wrote, in part:
> Not being able to make plans to do things
> with friends because you don't know if you
> will be off or on at a future date. This
> tends to add to the isolation ...

and then someone wrote, in part:
> PD is great fun if you are a masochist, If
> you enjoy watching your physical abilities
> gradually diminish over time, where it takes
> all your concentration to get across a room ...

and then peggy wrote, in part:
> Thanks for your input ... make those guys
> and gals who will be out there presenting
> the medical profession with reasons why to
> invest in their medication to drop their
> jaws in shock when they hear what it's
> really like. These sales reps will be
> the young "beautiful" people who have
> charisma and have never even seen someone
> who had to lose their self-dignity to such
> a debilitating disease ... "Your self-image
> is reduced until you feel like a freak in
> a side show."  "You become a prisoner trapped
> in your own body." "You lose your dignity
> when someone has to help you do a task as
> simple as going to the bathroom." I don't
> want to scare newcomers here, but I am
> thinking of the worst scenario in order
> to "get my point across." ...

and then greg wrote, in part:
> Tell them we are not little profit centers.
> Tell them we are their brothers and sons
> and mothers and friends and uncles and aunts
> and fathers. Tell them to do their jobs in
> a way that allows them to sleep well at
> night. Tell them that we need their help
> as we fight to save ourselves. Tell them
> to care. Tell them we are them ...

for me
it's a gift
a tough slap-upside-the-head kind of gift
but a gift nonetheless

it forced me to look hard at my life
and at my priorities

i had to make some changes

what i had thought was important
suddenly wasn't

what i had thought was cornball sentimentality
suddenly wasn't

i grew to learn that i had not received
a sentence to a living hell

i grew to learn that any 'hell' was
of my own making and my own thinking

i grew to learn that this is a tough test
is all

i am in competition with no one

i am not being punished

i am being challenged

i will rise to it

and thus find the gift in it

janet

ps
that does not mean that i would refuse help
i am not a martyr
i need intelligent caring people on my side
as much as anyone does
and a smart and sensitive pharmaceutical expert
just might be one of the most important
members of my health care team

--
janet paterson
a new voice http://www.janetpaterson.net/
pd: 56-41-37 cd: 56-44-43 tel: 613-256-8340
an akinetic rigid subtype, albeit primarily perky, parky

----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn